Hello everyone ❤️ Following my first post bloods where taken to see if anything showed for SLE, my ANA was abnormal so doc referred me strait away to hospital rheumatology ( have appointment in 11 days)

Feeling all mixed emotions to be honest as part of me is relieved I will hopefully get answers finally and medication to help with all my symptoms ( which I've wrote an a4 paper back and front full! ) but then I feel sceptical that I'll see a rheumatologist who doesn't listen or pushes me out the door 😒What do I do then? My health and body have deteriorated so much in this last year....... reading things about how some dismiss you so easily and often, makes me worry.

My biggest is being so scared as I watched my mum die to this, she was 38, I'm now 38. I've had symptoms for years and years. I read about lupus can be in the brain, the information I wrote was exactly to a T of how I would want to explain my brain and symptoms 😳......... can anyone share there experiences with me? Warm wishes ❤️Emma

10 Replies

At the first appointment, the rheumy will have his/her own agenda and may want to go through the checklist they carry in their head more than the one that's in yours.

But you can help things along.

First - did you see the recent post by Virginia70? She's done a really clear, concise and systematic record of her daily symptoms. I would guess that this has a much greater chance of being read than the kind of scrawled and rambling account that I tend to give! I'm going to start a record like hers from now on.

Second, I write down a couple of questions of my own that I *have* to get answers to. For example, sometimes, I get really anxious that I have some weird and worrying complication. In this case, I say very clearly, "I have been worrying that I might have X. Why do you think it isn't that?"

Finally, I always repeat my understanding of what is going to happen next and who will contact whom. eg "So you will be requesting a lung scan. It's going to take about 6 weeks and if I haven't heard anything in 3 weeks, I should contact your secretary?"

Just want to wish you lots of luck for your first Rheumey appointment. They will ask about family history and no wonder your worried with yours!. Treatments have come along way even since your mum's time !. Looking forward to your update. X

Emma, Hello. I just want you to know I am thinking about you. I think if you express yourself as clearly as you have done so in your post, then you will be an easily understood patient for any rheumatologist to work with. You have suffered so much from Lupus with the loss of your mum. I do so hope you get ALL the help that you need & deserve. Remember treatment is continuously progressing! Will be waiting to hear your update! Peace & Love Pixiewixie

Thankyou pixiewixie for your kind words. Just hope I'm good at face to face explanation 😬I'm sure it will be fine, I've wrote down a lot and feel so dreadful ( look it too 😋) surely I can't be ignored....will update after. Warm wishes to you xx

Best of luck for your appointment! You sound really prepared, that's great

I had a not-so-good first rheumatologist appt. It was awkward, I was bummed, but I still came away learning a lot... not about the disease (at all 🙄😋), but about how I want these appointments to go, what I want from my dr, how to stick up for myself, and how to best describe my symptoms. Plus, now I've had time to track symptoms over 7-8 weeks for my 2nd 1st rheumatologist appointment 😉

So even if your appointment winds up being less than ideal, I can almost guarantee there will still be a valuable takeaway from your experience. And then there's the possibility of a great appointment! So whether it's great, good, or bad sprinkled with some good. Either way, we'll all be here for you 🌻🌻🌻

I live in the states, and I'm lucky in that my health insurance does not require a referral from my gp to see a specialist. This rheum I'm seeing next was actually the one my gp initially referred me to, but the wait for a new patient appt was until January. So I sought out another in the meantime, which was my not-so-great appt. Then they called and said they'd had a cancellation, and I'd made it to the top of their cancellation list. So a bit of luck and a bit of waiting 😊